I keep wondering how I used to do it. Things are slowing down a bit and it brings a lot of mixed emotions. 3 years ago I was 100mph all day every day. I was a workaholic both in and out of the office. My goal every week was to build something, work on the yard, hit the lake, and in general just go go go. Last weekend we attached some yardwork. It really brought some clarity to me on where I am in my life and progression. I can’t pick up a 40lb bag of mulch and really struggled just to walk around the yard. When you struggle to carry a 1lb plant and walk it gets real.
To break it down I just can’t do it all anymore. It almost feels like I’ve aged 40 years in the past 3 months. It really had me down for a few days. The frustration brewed and I honestly just felt like quitting my job and curling up in a ball. My job has been a focus for me for as long as I can remember. More than that I’ve felt like the weight of that world fell on me. If I didn’t do my job the best I could people would go jobless. I mean that completely literally. Recently I hired another guy under me. I’ve known him for years and worked together previously. Reminds me a lot of myself a few years ago, and is a real go getter with a positive attitude. I have another guy working for me who is analytical and very composed. I thought the marriage of the two would help but it’s gone so much better than I thought.
To shorten this to the point I realized I don’t have to do it all anymore. I can truly start delegating and helping them grow into my position. I’m actually taking today off and working from home. It was a breath of fresh air. So, while I can’t do some things I’m discovering I don’t have to kill myself trying. Probably a lesson I could have learned much earlier in life. Its pulled an immense amount of stress off of me in the past few days just to know I can be flexible in my hours and where I work from.
So, per the usual it’s just ups and downs and trying to live somewhere in the middle. As far as my health goes it could be better and could be worse. My “good leg” is progressively going to crap. It’s rigid and feels like I’m in a 24-7 cramp. Going to try a new magnesium treatment to see if I can level out the spasticity a bit but it’s a bit depressing. I know the next step when this leg goes is a wheelchair and I don’t know how I’m going to handle that. My first leg completely went to garbage in 2 years but I feel like I don’t have that much time on this one. I guess only time will tell but I’m trying not to think about it.
As far as other symptoms I’ve been lucky. My arms seem strong and while I have fasciculation’s I really haven’t noticed any upper body weakness outside of the random moments of speech problems. Some great things are popping up in research though. Edavarone is up for FDA approval in June which is promising and I’m looking at some trials. There are also 100 other promising things out there. It just seems like I’m on a timeclock. I’m praying they find something to help give us all suffering enough time for there to be a cure or way to stop progression. That time just keeps getting shorter for all of us. Until then enjoy what we have and live the best we can.